April 22, 2022
Get your mammogram. It could save your life.
I take pride in helping others while never revealing my own vulnerability. I have never liked to share my personal struggles because I prefer to handle them on my own. The idea of anyone feeling sorry for me makes me feel guilty because the world is hard for all of us. However, I believe helping others is the true meaning of life and if this story helps even one person, it’s worth sacrificing my pride and privacy.
My mom was diagnosed with breast cancer in 2008. I decided to move back in with her during this time in her life and was able to help her throughout her treatments. I was with her through every step of the process. Anyone that knows me well has probably heard me say, I knew someday I would most likely get breast cancer. I’ve always said that if I ever found out I had cancer, I would immediately get both breasts removed and reconstructed. My OBGYN told me two years ago I should get genetic testing done but I put it off because I didn’t think I was ready to face the possibility of double mastectomies, which I worried might be looming in the future. I spent years after mom’s diagnosis reading everything I could about preventative steps. I had all the risk factors. I was hoping breastfeeding would buy me time but it seems cancer came for me faster than I ever could have expected.
When I had Colin eight years ago, I started developing chest pains. The doctors told me I was having “tension pains” and I remember my mom sharing with me she had experienced them as well. It feels like a stabbing pain in the center of my chest. My mom also had them in the same spot. I did extended breastfeeding with both of my boys and during that time period I was advised not to get a mammogram because breast tissue changes so much. I attributed the pain I had to breastfeeding.
When the pandemic began I had intended on weaning Alistair. He wasn’t ready though and we wound up waiting until this year. I knew breastfeeding helped prevent breast cancer and knew that it gave him antibodies. So I thought why not continue. I got very tired of it but it was a sure fire way to get him to sleep at night and I thought I was making the right decision to continue on because of the many health benefits.
Putting off my mammogram seemed like something minor. Not too important. In the fall, I started getting chest pains again. Pains that would wake me up at night. Yet I couldn’t find anything when examining myself that felt especially concerning.
When I finally got to the clinic for my chest pain, it was January. The PA I saw told she believed my chest pain was muscular. At this point she felt the most beneficial course of action was to wean and move forward with scheduling my mammogram. I was glad to have an excuse to wean because by this point I had been breastfeeding for a very long time.
I was told I would need to have stopped breastfeeding for 6 months before I was able to get a mammogram. Because of my mom’s history I went ahead and took the first available appointment 2 months after weaning. The moral here? GET YOUR MAMMOGRAM!!!! If I had gotten mine while I was still lactating they may have found it earlier. Follow your intuition even if the doctors tell you that you don’t need one or can’t get one. NEVER delay getting your mammogram. It could save your life!
My story with more details continued:
My dad died at the end of March and we got COVID at the beginning of April. It was terrible and I’m so thankful that Charles and I were both vaccinated and boosted. I tested negative just in time for my first mammogram. It came back “abnormal” the same day. I went back a few weeks later. That was the first available appointment. That came back abnormal as well, with a radiological rating of Birad 4 on the left side and Birad 5 (95%chance of malignancy) on the right with a mass around 1 cm.
At this point I’m researching as much as I can! I’m trying to set up genetic testing, attempting to get things done around the house to prepare for surgery, preparing for backup at work, telling my closest family and friends. I didn’t know what the timeline was supposed to look like and I had nothing but the internet and previous experiences with Mom to inform me.
I was scheduled for my biopsies 4/25. I was terrified about the biopsy pain but I barely felt a thing! The pathology report was delivered digitally to me that same night. The diagnosis was favoring Invasive Lobular Carcinoma in my 1cm mass and Lobular Carcinoma in Situ on my left side. I’m thankful I knew how to read it and I was able to get some answers quickly due to my own research. I can’t imagine how anyone else would have handled it considering no one called me to discuss the findings.
They still had more tests to run and I assumed that was why they didn’t call me. However, I didn’t hear from any doctors at all over the next few days. It was very disappointing and it made me feel that my doctors did not care about me. I called the hospital, sent my General Practitioner and OBGYN messages. A nurse would write back to answer my questions. My GP referred me to a genetic counselor through MyChart per my request so I could set up an appointment for genetic testing.
Considering the testing might be something that would help me make decisions regarding treatment options and surgery, I thought it best to get it on the schedule ASAP. All the while, I’m wondering why no one has called and why they didn’t prioritize getting me in faster.
My biopsy site check was scheduled for the 28th. The Hospital did not check my site but used it as an opportunity to introduce me to my care team at this appointment and they gave me two options: talk with a surgeon ASAP or wait two weeks to speak with a panel of experts about the best possible ways to move forward.
For anyone going through this in the future, I felt sharing this process might help you understand how it all works. The doctor and my care specialist assured me that my cancer, which is tubular, tends to move slowly and rarely spreads, which enabled me to make the decision of waiting to see my team of specialists on May 13th. It’s a way to get a “second opinion”. I am still concerned about waiting for any amount of time because now that I know it’s there, I want it out of my body. I have since learned through the internet that a reasonable timeline for double mastectomies is around 40 days after diagnosis for ductal carcinoma.
They also told me if I had a more aggressive form of cancer, I would have been put on a “priority” list and they would have pushed my appointments to the forefront of scheduling. These are the procedures and standards of care with Lehigh Valley Health Care. I am spending today getting referrals for St Luke’s in Allentown so I can consult with them as well. I am very thankful I have two big hospitals to choose from here. I’m also considering using Memorial Sloan Kettering in NYC.
We have no control over how we come into this world and sometimes even less control over how we leave. All we can control is what we do while we are here. I intend to win this battle but the fight to live every moment to its fullest is part of every action I take. I know I am very lucky to be here. I’m lucky bombs aren’t falling from the sky above me. The idea that we ever got here at all is miraculous and it never fails to amaze me. Every second we get in this life is a blessing. Every wrinkle is a kiss of good fortune but it’s hard to see that all the time. That is the hard part of most people’s daily struggles, including mine.
I hope at this place in your life and at this same moment in mine, we are all able to give ourselves the grace we deserve. I hope we can forgive ourselves for the moments we get wrapped up in stress, anger, fear or sadness. I hope we can encourage ourselves when we are able, so that we can hold onto the happiness of the present moment and appreciate our own humanity.
We are all doing our best. We all have personal battles and every one of them matters. Give yourself a hug from me today. We’ll get through this together!
I want to share my experience with the hopes of helping my friends and family. May it serve as a reminder to you to take your mammograms seriously! Remind your friends and family to get them. It could save a life. It may have saved mine.
I plan to make updates for my friends and extended family on Facebook to make it less cumbersome moving forward. Please feel free to reach out to me individually if you wish to. I love you all and I am hopeful that I got it early. It’s a nightmare to get diagnosed with cancer at any time in your life but it’s a good thing to find it so you can seek treatment immediately.
If you are going through a breast cancer diagnosis. I cannot recommend this resource enough. I am the kind of person that needs information to get through daily life but especially through crisis. This channel will guide you through the typical timeline and answer questions you didn’t know you had.
Breast Cancer School for Patients
